Tales and fleeting memories of my liver journey unabashed

Author: leahdierking

I hope you are at peace. I still struggle with you being gone. I made sure dad had lunch today. He meant to have shrimp, but he forgot to get them out of the freezer, so he had a can of soup. He walked Maxwell 7 miles today, total. He seems truly happy and at peace in his own way. Please don’t be mad but, he is going to have a chili dog for dinner tonight and a cherry coke. So please don’t knock it over or anything. A joke.

As I type this, I’m sorry. I have been putting it off to find complete silence and wellness in my life/day to write. Life is so deafening most days. I never get any respite. I’m exhausted the moment I wake from thinking. From constant dreams that you are still here. Pleading your case. Most nights you try to convince me you are still here. Every night. I’ll settle for silence tonight. Tonight, I miss you. Tonight, in my imagination, I am still in Howard’s old bedroom above you and dad. Safe. Nothing bad could ever touch me there.

It’s different at home now though. I was there earlier to help dad again with his computer. The image of his office, adjacent to your bedroom still breaks off a piece of my soul. The ever-closed door since that day. There’s a void in the house. It’s quiet. There’s no loud, “hello” when you come in through the back door. There’s dad cleaning up his lunch and ya’lls puppy, now a dog, greeting me. Jumping. Barking. Tail wagging. It took him a while to get back to himself after. After…everything. He is dad’s Smidgeon.

There has been beauty since you chose to leave. There has been pure happiness between the family that has been incredible. There has been harmony. There has been forgiveness and acceptance. I guess that might be what you would consider – that we are finally beginning to heal. There seems to be a true bond forming, cementing us all. Healing disguises himself in the oddest way.

I’m still scared. I still miss you. I still put utterly silly things on your gravesite that only you and me would laugh at. That means everything. Sitting there when no one knows for hours. That also makes me furious at you. That reminds me I love you. Where is that line between love and fury. It must be somewhere. I’ll find it one day. Or I won’t…. But I won’t give up looking. It reminds me of the final words I said to Puddles this year before she left. I cried into her ears and told her, in a fierceness I did not know I had, that I would find her. I don’t know what told me to say that, but I believe it with all my heart. For her. For you. One day I will find you both. And you know how stubborn I am.

This year, I am reminded of one year when you got upset I did not come home from Seminary to be with you on Mother’s Day, after telling me to stay on campus to study. You thought I would surprise you, and when I followed your directions I was punished. It was a horrid argument. One of our many. One of many others openly judged. Many that no one other than us understood. After you left people have tried to console me and make sure I knew you loved me. Some have reminded me what a terror I was with my non-traditional choices from pretty much everything. Reminded me, that they knew you were sad, but were embarrassed by your sadness. Openly admitting that your sadness did not fit into their lifestyle. Such fear. Such sadness. Such a violent paring of empathy and rage. Such compassion lost, yet grasped back at the last minute, only to be cherished as a remnant of that feeling you have in the moment of remembrance.

You raised me to be independent. To be smart. To never be afraid, but you kept a leash on me. I could only do those correctly if I stayed close. At the time I interpreted that as you controlling me. If I had only known that you were scared. Always scared. A fear that had begun long, long before Howard, dad or I existed from when you were a child. Scared to release the reigns. Scared to be alone. To be desperate to keep everyone around you from the moment, no matter what the cost.

So, you know, I love you more than ever now. The deafening presence of your absence, in my most desperate hours this last few years can be felt in every fiber of my being. I see you angry. I see you purely happy in moments only ours. When you allowed my insanity to let your guards down. I miss seeing you truly happy with your demons as far away as possible. I miss seeing you being as strong as anyone would be, yet barely holding the wall up against them at times. I held your hand. At times I held you crying. I wish you would hold you now if you could.

If there was one thing I wish others knew about you on this day celebrating, it would be this. My mom. My mother. My adopted mom. My mom that was chosen for me by a force greater than any of us to be my very own mother. You spent your entire life devoted to others. Devoted to helping others. Devoted to those tiny eyes staring at you as you sang songs in the classroom about life, love, sea creatures and God. You did all of that while keeping your demons at bay as best as you could. You guarded that from your own children as much as you could. And when you could no bear it anymore, I believe you found peace for the first time.

I have to believe that where you are is better than the demons that you kept at bay daily. I wish I knew your ghosts. We would have sheltered you in love, against the darkness. We would have held you through the darkness. Death would have had to pry you from our hands. Amidst our cries. Amidst our anguish. I know sometimes even that is not enough.

Being in the hospital this past Christmas was a complicated experience emotionally speaking. I wasn’t just in the hospital, I was back in a negative pressure locked room alone where my nurses had to wear hazmat suits basically to come and go. Fortunately I had a pretty large window and interesting view. Christmas is my favorite holiday ever. I love decorating, wrapping presents, watching my family open what I had picked out for them, cooking holiday food, driving around looking at Christmas lights, etc. This year I had none of that.

For the first few days I sat and wallowed in it. Like a big puddle of sadness and self pity. However Christmas Day changed my perspective a bit. I realized my hazmat bubble room was on the stroke unit for Methodist and across my window was the landing area for their Life Flight. On Christmas Eve, at midnight, my nurse and I watched two Life Flights leave and return twice. This began to shatter my self pity as I thought to myself that whoever is on those flights is having a much worse Christmas along with their families.

On Christmas Day, my patient care assistant would come in my room exhausted and talk to me for a bit. She kept mentioning that all day she had been going from room to room to elderly stroke patients and was having to explain why they were here in the hospital and that they had to stay here for a while, when all they were was confused and wanted to known where their family was. The PCA shared at the end of the night that most of the patients on the unit had no visitors.

The day after Christmas arrived (Boxing Day!), and over the announcing system throughout the day there was new patient after new patient being admitted. My mind wandered immediately imagining that each of these people being admitted had just spent a great Christmas with their families and then suddenly got sick and needed to be admitted. I started thinking about how worried their families must be. More individuals that are in my immediate area that were having worse Christmas’.

This train of logic of who had worse and worse Christmas’ could be infinite if I sat long enough and thought of everyone and it reminded me that the percentage of people that had wonderful, warm Christmas’ surrounded by their loved ones was probably pretty rare, instead of being this common phenomenon that happens every December 25th that I take for granted.

So I guess the moral of the story is – yea, I spent Christmas alone in a hazmat cell. I received one phone call, 2 texts and 1 FB messenger msg bearing “Good tidings of Great joy”. There are no gifts under our tree at home this year. There are 2 Christmas cards on our hutch. But despite the barriers dividing me from my dad, brother, husband and step daughter this year – I am alive, I am happy, and I have a handful of people that truly love me. So maybe my Christmas really does fit into the small percentage of those that had wonderful and warm Christmas’.

Told by a child today, after accidentally walking through an area a restaurant employee was mopping, “that’s what happens – when your mouth moves, your brain stops.” Then followed it up with, “an old fart told me that once.” This kid was maybe 7 or 8? It’s been such a weird “Children of the Corn” day. I’m currently at a hotel on the beach in Galveston because my oldest puppy had surgery today here and she’ll be released from puppy hospital-jail tomorrow morning. So far, other than the “mouth-brain Dr. Phil Jr.” outside my restaurant, I had a little girl give me a solid thumbs-up the entire way she walked across a cross walk while I was in my car. I had a little girl tell me that the throw I did with a beach ball in the hotel pool to my step daughter “wasn’t very good” (Ok, Coach…come tell me that in the 8ft area). Then at dinner, the apparent head preacher of the “little shit Children of the Corn Conspiracy” here on the island walked by my table and poked me in the stomach right when I was taking a bite of not so healthy food. What in the actual effe. I think this might be karma paying me back for my neighborhood illegal Pygmy goat that I recently bought/rescued from being dinner the other day. I really can’t even make this up. This is my life lol.

Downside of staying in a hotel is that it requires bathing suits and sunshine…set me back several years/days/moments mentally with how I feel about my body. Like, I’m in a place where in the moment in the pool I can feel safe and confident to have fun, but when I get back to the hotel bathroom with all the mirrors that look like and are angled to resemble a dressing room I realize how utterly confusing my face and weight look. Weight wise I feel like I look huge (huge being above the statistical average and my BMI giving me the proverbial finger), I’ll admit that. There is no way around that. I really need to lose a lot of weight for my new liver’s sake. But facially, I can look either like a smashed cartoon character that’s super fat or a regular looking semi pleasant person from the other angle. Makes me wonder about how people see me now in public – it’s so different. I’m like a walking cartoon character. I joke about it but it really bothers me a lot. I feel so self-conscious all the time. I feel like people claim to be pro “body positive” but in reality, they aren’t. It’s just a fad that they like to support because it’s trendy and makes them feel or “look” less judgmental, when all the while in the back of their head they are saying, “there’s no way I’d let myself get that big, but good for her with her confidence!”. I wish I didn’t waste my time thinking about this or even writing about it.

7.21 (Next Morning)

New day, picking up Puddles (dog that had surgery) in a few hours – have time to myself this morning so I’m spending it writing on the balcony of my hotel watching storms roll across the oceans horizons. It’s pretty zen. My round and workaholic frame doesn’t get much actual yoga, so when I can get mental yoga like this it’s amazing. Feet up, ocean in front, the smell of rain, storms, sea breeze, Spotify, and earbuds on. Had such strange dreams last night. I remember trying to make myself in the dream remember them because I thought it would make a great story. Just heard thunder.

The other day Sean asked me in the car – would you 10 years ago believe anyone if they said to you, “Leah, in 10 years you are going to be divorced, remarried, have an 11-year-old step daughter, own a pygmy goat, have a PhD from UTMB’s Biomedical Sciences School, have survived a liver transplant/life support/kidney failure, cleaning up after your mom’s suicide, and live in Houston in the same neighborhood you lived in when you were 1 year old….would you believe them?” Answer: Hell no.

Life’s persnickety at best. This change has made me (forced me to be) flexible. It’s made me, at times, feel like I’m betraying myself. I thought I knew myself, I was set in my ways of what I liked and did not like. My first marriage was pretty much a solo gig since He was in Iraq 90% of the time. Now I navigate my day around a husband who works from home (while I’m finishing my dissertation from home too), the 11-year-old (during summers and holidays), a goat, and 3 dogs. How have I not absolutely lost my mind yet? Most individuals when faced with giant life altering events have some sort of solidarity of their former life to fall back on as support during the coping time. I fell back on everything being new and out of my control. I fell back into an abyss. Some days I think I’m still sitting at the edge of the abyss weighing the options of which direction is really the best. Relinquishing control to life is hard for me. I fight it almost everyday tooth and nail. Don’t get me wrong, I don’t fear change or challenges. I just want to know what I’m about to get into before I face it. Makes the enduring easier. Makes the setting my course to ride the storm out easier. Probably surprises is a better word. I hate surprises. Control freak thing again. What can I say, I’m a “clinger”. Or rather a survivor. I always ace those “Would You Survive the Apocalypse (or Horror Movie)” BuzzFeed quizzes.

I think I could finish my dissertation from this balcony. It’s the right amount of 1970’s haunted beach motel vibe and inspiration and people watching. It’s a little voyeuristic I guess. I am so close to the gumbo restaurant that next door that I can see literally what is on people’s tables (sidebar: you know you’re a gamer nerd when Word auto-corrects “restaurant” to “recast aura” #keybinds). I’m also so close that I’m stealing their wifi instead of the hotels. Note to anyone curious. Wifi signal based in the lobby meaning to reach the entire hotel that was built with brick interior room walls and led based paint = no wifi for you. Holy catfish smell all of a sudden. It’s 10 am, who is ordering fried catfish for breakfast? Never mind, that actually does sound kind of good…wonder if they deliver…I digress.

I’m sure everyone that has chronic medical problems that continuously land them in the hospital or in surgeries has their own routines for what they do in the days prior to scheduled visits/surgeries. So I thought I’d share my routine with ya’ll since I am t-minus 40 hours to surgery as I write this.

Clean the house thoroughly. Leaving a boy and three dogs unaccompanied in a home for a few days without prior cleaning is gutsy at best. Prior knowledge that I will return to the leaning tower of pizza boxes, dirty dishes and laundry has trained me to clean and organize everything as best that I can to offset this masculine tragedy.

Sleep a lot…even though I will be getting a lot of medically induced sleep in the immediate days prior to surgery, I tend to get stressed the few days before (totally normal I’d like to think) so getting restful sleep and relaxing has become important to me and my body tends to thank me on the flip side.

Build a recovery couch-fort for propped up sleeping so my incisions don’t try to kill me every time I move and get up. My current fort this time included actually rearranging the entire living room, purchasing a super dope 70’s recliner fluffy herman miller eames chair and ottoman, and making sure my recovery couch-fort has ample spots for my dogs to snuggle up in.

Packing my bag. This requires much care and slight deviation from my rules while in the hospital. As someone who is ALWAYS put on NPO and prone to (as I have previously confessed) to sneaking off to the vending machine or ordering ghost-guest trays to munch on, this time I am packing my own snacks. This includes sugar free life savers, sugar free gummy bears and a reduced fat pringles can. Hopefully this will satisfy rogue cravings incase the NPO monster visits me post-surgery in a more healthy manner. Also in my bag is my bathrobe that serves double purpose of a blanket since hospital blankets suck and its always ice bath cold in my rooms. Fresh and fun socks, my plush liver shaped pillow, ear buds, phone charger, phone, pen and notepad. In case you’re wondering why not an ipad – shockingly enough I personally don’t own one and I’m totally ok with that.

Exchange cars with my dad so he can thoughtfully take mine in to get serviced and an oil change while I’m in hospital -jail

Make sure all comfy clothing I might want to wear when I get back from the hospital is clean since I’ll be bed/couch ridden about a week after I get back.

Double check all tv shows I’ll miss are DVRed for the week.

Make sure my kindle is updated with any/all books I may want to read while I am there.

Update my “Dilaudid Play List” on my phone music wise – yes, I really have a play list titled “Dilaudid” to listen to while I am medicated to help with the calming/enduring pain process.

And FINALLY make a list of all medications I am low on to take with me so the hospital pharmacy can go ahead and refill them during my stay and deliver them to my room the day I am discharged to save time.

And that’s all I can think of for my pre-surgery routine lol….should be an easy procedure by itself. The only issues that my team is concerned about is site infection and/or catching something while at the hospital itself since it’s cold/flu/pneumonia season. I’m sure I’ll be just fine though 🙂

Sorry I have not posted a blog since before my (x) ….the trip to the Red River cabin, then Thanksgiving, then 2 weeks in the hospital, a week to wrap up the semester, then Christmas break with a bird named Charli and her Sean (which made the entire world seem right). Which leaves us to now….it isn’t that I haven’t been mentally writing in my head this whole time, because I have.

After Red River, one of my medicines in particular ran out. I, like an idiot, thought that I did not need it. It was frivolous. It didn’t help my liver in a direct biologic way and I was so happy on my vacation. It was Celexa, the highest dose normally used for someone my weight/height/health issues. I was an idiot. See, contrary to what sadly I still have in my head as stigma regarding mental health – the facts are the facts. So lets just do a quick once over on the facts regarding me and mental health. (Oh, and taking myself off of it was severe enough to put me in the hospital…just fyi…take these meds seriously please if you are on one)

First time I was taken to a therapist was when I was 8 years old – even had a sit down with Anne Smith when grade 4 started to make sure “we didn’t have a year like the last one”. I love Anne Smith, if I had a grandmother figure growing up other than my fathers mother it would be her. SBS would be behooved to clone her and have her as their headmistress forever…and lord help me, I’ll always remember my first response when facing her accused of cheating on an exam was, “i just wanted to see how wrong her answers were”….seriously, that came out of my mouth to Anne freaking Smith. #misplacedguts #mymomsreaction

Since then, I have been to a therapist on and off my whole life, always leaving them high and dry when they start asking the “tough” questions

Amount of time I spent in therapy after my mother’s suicide….3 weeks. I’ll let that set in. 3 weeks. Then I decided I didn’t need it anymore, again with the hard questions – I bailed.

Did I drink ridiculous amounts of alcohol daily, sun up to sun down, to make the sadness in my head go away and to just be able to function at a normal level in public just making basic conversation? Oh yep.

Do I still struggle A LOT with social anxiety even to the point of being able of small talk to strangers or acquaintances in person? Yes. I am able to be witty and almost normal when it comes to texting or typing….in person, it’s an entire different sea of crap I cannot deal with normally unless I’m shit faced drunk or very comfortable with you.

Do most transplant teams that particularly transplant a liver to someone at the brink in ICU demand that you see a transplant psychiatrist (that you actually speak to like a therapist for an hour weekly) because the experience in and of itself, despite the shit that got you there in the first place, is down right on par with PTSD? Yep. I spent the first six months home falling asleep reliving the experience of being taken into ICU every night until I fell asleep.

Anyways – so that was going on and some background. I’m going to be completely transparent and share something I wrote on my Blog file on my laptop as an example of how dark my mind got without having this normalizing medication. As a disclaimer, all medications do not do this, and every case is different. However. When they are needed, they are needed. There is ZERO shame in that. People should not fear seeking help because of what their employer or future employer might say or discriminate.

This issue, i repeat, cannot be championed enough.

If I had a wish this year for 2017 – it would be for people to just be more open about mental health and struggles they have. It’s not so they get more “likes” or “retweets” or to be the “open” person in their social media group. You see on TV and online celebrities talking about being open about mental health and that is wonderful. Fabulous. I applaud them. Then I see, when I open a popular online news source I read each morning and buried under all the chatter is a story about a 12 year old using FB live to broadcast her suicide. If you look through her feed you can see her obvious struggle. What that girl (again WTF SHE WAS 12…yes 12), and me, and most of us that struggle with these issues need are real life friends that relate, that aren’t scared to bring it up. (This is happening to loved children so much younger than I could ever begin to understand) I would personally love it if someone asked me for once how my struggle with anxiety and depression are going now that I’m no longer an alcoholic but just someone struggling to live without any vice to numb my brain to it instead of, “Hey leah how are you today?” I see no need for it to be any different, those two questions. How my day is and how I am doing is directly tied to the other – the phrasing just spares the other person the stigma or awkwardness of asking directly and giving them a “whew…”/easy out when I just say, “Oh I’m good, how are you?” Yea, no offense, I am who I am and my existence doesn’t preclude your comfort. #getoveryourself – People are sad, horrifically sad, confused, sleepy, amused, God help them hilariously happy, and pensive. That is humanity. That is love. That is madness in it’s sanest form.

My blog entry on my word doc without my medication…after one of the happiest times of my life…this emerged because that is how mental health really is.

11.28.15

Taking control away from a lifetime control freak makes for a sad control freak

Taking a page out of Jenny’s book. One of the things I admire about Jenny Lawson is how utterly transparent her blogs are. If she’s battling depression – she’ll let you know. If she is being silly with her daughter in the park – she’ll also let you know. I love it.

I’m fairly decent at expressing myself on here I’d like to think. In person, it’s a whole different story. Before everything health wise – I battled social anxiety bad. Still do. Especially now without “liquid courage” when I try to speak to strangers for extended periods of time I just end up spouting nonsense at a freakishly fast pace. Kind of like a nervous, sweaty auctioneer.

The last two weeks have been an emotional upheaval for me. I had my on year check up on my liver, learning that my liver already has signs of NAFLD, creeping up on portal hypertension, osteoporosis, and kidneys at about 35-40%. Most of those are due to my medications that keep me alive daily but slowly eat away at my body.

Anyways, but I went on vacation to celebrate my one year anniversary of extra life. (which in and of itself sounds kind of dumb because every day should be like that for everyone) Spent thanksgiving with family and achieved a few work/school related accolades as well. But I can’t seem to shake the dark cloud that has settled on me. So many trivial thing are going wrong that I have zero control over.

I have nothing to say.

The holidays are always so strange to me. Everything in the last two years has changed too fast. In a way, Christmas and Thanksgiving in the hospital last year was comforting because I knew exactly what to expect. Wake up, keep recovering, go to sleep. Easy peasy. Year before that none of us really knew what to do since Mom has just passed. Dad went up to Washington to be with Howard and his family and I stayed here. This year, so far thanksgiving was just strange. It honestly just felt like any other meal. Maybe I was too exhausted from the trip to enjoy it…who knows. I’ve tried to start decorating for Christmas for the last few days, but it seems lacking. Example. I literally just have a bare Christmas tree in the living room now. No ornaments because I have no clue where the ornament box is. And I could probably stop there regarding the decorating and be just fine, which is TOTALLY unlike me.

Maybe it’ll all kick in when I’m rested. Or maybe not, who knows. Maybe we all could use a Christmas without all the decorations and distractions.

11.29.16

This time of year is turning out to be excruciatingly hard for me, which is pretty surprising since all year I had been looking forward to this time of year and how happy and excited I would be. Now, there is nothing. I just stare into space with dark thoughts swirling in my head. A thin veil of consciousness providing the only protection from the evil that pokes at me without cease. So many thoughts. Too many thoughts. A stream of conscious madness ushering in what? A new day? A new demise? All I long for is quiet solitude. Space to be left alone from everything so I can catch my breath. It seems like the only place left I feel safe is writing. I see the words on the screen and therefore must be thinking of something and my hands must be typing. This feeling reminds me of hiding from bullies when I was young. I remember two assailants in particular were so bent on making fun of me and harassing me to my face that I sought refuge in a girls bathroom and locked the stall door thinking I was safe only to find moments later they had followed me into the bathroom and were now hanging over the stall side walls refusing to leave. I was trapped. I had to endure it until it ended and I had no control.

Looking back over the Liver Anniversary Vacation, one conversation stands out to me. On the actual one year date, Sean and I were talking about how people always ask, “Where do you see yourself in 5 years?” when you are coming of age. It’s a pretty interesting question to think about when you’re all grown up. 5 years then seemed like such a long time. Now, 5 years is nothing. It’s a whisper…a flicker…a sneeze…then *poof* gone. You’re left baffled, looking around like time is some tangible thing you can catch and shake the crap out of for running so fast from you. As a former lifeguard in my youth, I kind of picture time now as this bratty little kid that won’t stop running around the pool no matter how many times you blow your whistle at him or sit him out. The little shit will still keep sneaking out of his chair and running around when you aren’t looking.

So interesting fact – when we had this conversation on the one year date (11/16/16) – we realized that looking back 5 years ago to try to think of what we both thought would happen in our lives that the date would have been 11/16/11. Kind of interesting if you are into numbers and meanings. I digress..

So where will you be in 5 years? I will have made it half way to the 10 year survival mark that is so crucial for transplant patients. Being alive in 5 years will be a huge milestone for me now. Well, I guess now 4 years from now that is…

Where was I 5 years ago if I were to ask my former self the same question? I was in the 6th year of a now former marriage. I had just moved to Galveston Island and across from a family that would forever change my life course in a way I never could have imagined. I had spent the spring of that first year living at home with my ankle healing from surgery. The last time I would have shared morning coffee and kisses goodnight from my mother (still necessary as an adult, I promise).

What has happened in the last 5 years? Divorce, PhD pursuit, mom’s suicide, new relationship, liver transplant, sobriety, said goodbye to 2 furry puppy friends, relearned to walk, learned what it was like to be on life support, began being a stepmother figure to a little girl, moved 3 times, got in 2 car accidents…that’s all I can remember off-hand..

I’m sure everyone’s “last 5 years” are full of equally hard and wonderful things. Despite my last 5 years and my current 5 years I can’t honestly say that I feel remotely #blessed or #happyaboutit ~ but I can greet and make peace with both with somber reflection and respect to those memories and future ones. And hope that in 5 years I am able to say the same.